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Desperate For An Answer


ItsNotMyProblem

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ItsNotMyProblem Newbie

Hi there,

Firstly, thank you for reading my plight. I have been struggling with this digestive issue for a while now, and I figured a good way to figure out what I may be going through would be to ask a bunch of other people who could potentially be suffering from the same or similar issues.

I believed I had a problem with gluten. If I eat wheat bread, I get bloated. I feel sick. Sometimes I have problems with going to the bathroom (but I've largely remedied that just by taking fiber supplements).

Here's the thing, though. I can eat white bread all day. But I can't eat white pasta. If it's a wheat or whole grain product, it will make me gassy and bloated. Any type of pasta does the same--but white bread is totally fine. I feel just fine after eating it. I've been taking probiotics and my fiber supplements. It's definitely helped, but it just seems to unpredictable.

Does anyone else have this issue? White bread is fine, but no pastas or wheat/whole grain bread.

Thanks so much in advance for any insight!


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GFinDC Veteran

Hi,

 

Symptoms are pretty random with celiac disease.  The best thing to do is get yourself tested for antibodies and possibly an endoscopy before stopping eating gluten.

 

There is a really wide range of symptoms that untreated celiacs have, including no physical symptoms (silent celiac).  Some people only have a skin rash and no digestive symptoms.  So diagnosing yourself by symptoms and somewhat random reactions isn't always workable.  That's why the antibody tests are helpful.

 

If you really don't want to get tested then doing an elimination diet is the way to go.  You would need to eliminate all gluten from your diet for 3 to 6 months, and then trial eating it again for a month.  Most likely you would have clear symptoms then.  But if you wanted to get tested after that you would have to do a full gluten challenge, which some doctors say is 8 to 12 weeks of eating gluten.  That can be very unpleasant if you have symptoms, so it is better to get tested before stopping gluten.

Celiac Ninja Enthusiast

That antibodies test, the doctors will know it's name by Celiac Panel. It's going to test your DNA co-signs. Very accurate test. Takes a lot of blood though, so bring water and something gluten free to chow down on afterward if you get faint from giving blood.

beth01 Enthusiast

Not all doctors know which tests to order, a lot of doctors in my area are only ordering the tTg IgA and total IgA.  Don't assume that the doctors are going to order a whole celiac panel.

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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